Caring for others with chronic illnesses

[Nick_F]

Come share stories, experiences, frustrations and concerns about your life caring for a loved one with a chronic illness.

[Nick_F]

I will place this here as a place holder in order that I will come back and flesh it out later when I have time.

I am currently caring for my mother, 76, who has COPD (degenerative lung disorder). Although I do this willingly, it is very difficult. It impacts with almost every aspect of my life, it can be very distressing for both of us and the situation will only get worse.

There may come a time, in the near future probably, where decisions will have to be made as to whether I care for her full time, thus give up my current life, or whether she goes somewhere that she can receive appropriate care without me.

Not sureif I want to think about any of that too much at the moment.

[conny]

That`s a hard one nick and a realy tough decision you have to make in the near future.
how is the health care for the elderly in the UK and than escpecially for the chronic ill people?

[desertrat]

maybe this is also a place for all the alzheimer grandmother stories we shared a while ago at the diner ? i pm'd bubblewrap since she takes care of her grandmother and i think she could sure use some backup and hugs.

i also have a grandmother with alzheimer, luckily right now, it is still at a stage where my grandfather and she can live alone. my mum helps them out once or twice a week and i do whenever i'm home (they live to far from vienna for me to drive there at a work day). it's sad. seeing how the person you love so much gradually changes. and nobody can do anything about it.

[Nick_F]

Well Conny, if the current level of care that my mother receives from the health authorities is anything to go by (when she is not in hospital) it probably won't be very good. 

However, i think that she is likely to end her days in hospital, where the level of care is reasonably good.

[Nick_F]

maybe this is also a place for all the alzheimer grandmother stories we shared a while ago at the diner ? i pm'd bubblewrap since she takes care of her grandmother and i think she could sure use some backup and hugs.

i also have a grandmother with alzheimer, luckily right now, it is still at a stage where my grandfather and she can live alone. my mum helps them out once or twice a week and i do whenever i'm home (they live to far from vienna for me to drive there at a work day). it's sad. seeing how the person you love so much gradually changes. and nobody can do anything about it.

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

[conny]

i,btw,am glad that you made this thread,gives me a chance to rage every once and a while of my wrecked body 

i`ve got multiple chronic deseases,none of them life treathening.
As long as i can remeber i`m habing a bad back,i made it stronger trough horse riding but later on with working with multiple disabled children it gor worse again and i developed a hernia.the first neurologist thought it wasn`t that bad and let me suffer with it for three years.at the end i couldn`t sit or hardly walk anymore.went to another neurolist and was operatied forst thing next week.just in time,cause the nerve was almost dead.That is almost 10 years ago,but the nerve did get some damage and my back will always be a soft spot and gives me pain every day.also i cant sit very long and have to rest during the day.

than i dont smell or taste anything,cause of some polips in my nose,have been operated on them,but they come back as quickly as they have been removed.so no cure for that.only prednhison which i take on special occasions,as for a vacation or special dinner.

three years ago  i developed chron`s desease,but is stabil now,if i keep myself on a sort of a diet,which i sorted out myself by accident.

i`ve got astma as well

and last but not least  last year i got shingles and that didn` go away after treatment as ususally is the case so i now am having
post-herpetic neuralgia.that`s kind of a nervepain,and it comes of and on,.there are days that i feel hardly any pain,and as for last weeks i`m in pain all day. it`s also on my back,so double nerve pain there.

i dont know anymore how life is without pain.sometimes i see people do things and think wow must be great tp do all that on one day and not have any burden at the end of the day.

i do go out and have fun,and it`s not that i`m having a bad life.i am happy and love my life but i do have to be careful with how i fill in my days.
after a weekend out of town i`m tired for that next whole week,but that is worth it than.life`s too short and sometimes you gotta make choises!!
gonna try some acupuncture today,and hopefully it helps.

[desertrat]

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

that's really tough. in that respect, alzheimer is a merciful disease because at a certain stage, people don't realize any more what's happening. however, my grandmother is not there yet (fortunately or unfortunately ?). she suffers from depression because she realizes that her mental capeability decreases.

how does your mother take it ? she's not that old yet with 76. do your siblings help caring for her as well or are you on your own ?

[conny]

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

this is so tragic,i can imagine how she must feel. it makes you so totally depend of others. that must be realy hard for her!!

i see it with my mom,she is 66 and having post-herpetic neuralgia as well(just like me) but in a very heavy way.she screams now and than from pain,has it all day and night and doenst come even out of the house anymore.due to medicines she took she now has eyeproblems and all other kinds and cant drive a car anymore or walk by herself!
from a independ woman,who would go on vacations alone and walk miles and miles in japan/new sealand and so on,she now is a wreck,sitting at home,doing nothing that sleeping and crying.
and she went trough everything but nobody can help her.although she`s gonna have an operation on her eyes in a few months now.
and they are speaking of again a new med against post-herpetic neuralgia.

i realy hopen i never am getting it in a way she`s got it.
she speaks a lot of killing her self,and i dont know how to react on that.
but when i am in pain and when i think of hers to be so much more than mine,than i sometimes can understand her.

[desertrat]

conny, in an austrian saying i would say you yelled really loudly when god was distributing diseases 

i'm so sorry for you, especially those stupid things that mostly cause pain and are not to come by. i'm having trouble imagining what it is like since i'm blessed with a very healthy body, but my mom has something similar with her shoulder. and there is just no hope that it will get better. sometimes i'm so angry at the whole health system cause i just think things like how can that be that you transplant hearts and re-attach lost limbs but you can't do something as simple as make this pain go away ?.

i admire you for your nice and friendly, positive personality with all those problems you have. and i can only wish, pray and hope that things will get better one day ! don't get tired of trying to find something that helps...

[conny]

thanks martina you realy made me laugh 
and yess i have to stay positive otherwise i will get worse,so always keep the faith!
and i seek for natural ways of deeling with the pain and the deseceases and not the "normal" way.only if nessecary.
but when i look at my mom who took experimantal meds,that bruoght her more bad than good things! so i wont go that way for sure.

[Nick_F]

i,btw,am glad that you made this thread,gives me a chance to rage every once and a while of my wrecked body 

i`ve got multiple chronic deseases,none of them life treathening.
As long as i can remeber i`m habing a bad back,i made it stronger trough horse riding but later on with working with multiple disabled children it gor worse again and i developed a hernia.the first neurologist thought it wasn`t that bad and let me suffer with it for three years.at the end i couldn`t sit or hardly walk anymore.went to another neurolist and was operatied forst thing next week.just in time,cause the nerve was almost dead.That is almost 10 years ago,but the nerve did get some damage and my back will always be a soft spot and gives me pain every day.also i cant sit very long and have to rest during the day.

than i dont smell or taste anything,cause of some polips in my nose,have been operated on them,but they come back as quickly as they have been removed.so no cure for that.only prednhison which i take on special occasions,as for a vacation or special dinner.

three years ago  i developed chron`s desease,but is stabil now,if i keep myself on a sort of a diet,which i sorted out myself by accident.

i`ve got astma as well

and last but not least  last year i got shingles and that didn` go away after treatment as ususally is the case so i now am having
post-herpetic neuralgia.that`s kind of a nervepain,and it comes of and on,.there are days that i feel hardly any pain,and as for last weeks i`m in pain all day. it`s also on my back,so double nerve pain there.

i dont know anymore how life is without pain.sometimes i see people do things and think wow must be great tp do all that on one day and not have any burden at the end of the day.

i do go out and have fun,and it`s not that i`m having a bad life.i am happy and love my life but i do have to be careful with how i fill in my days.
after a weekend out of town i`m tired for that next whole week,but that is worth it than.life`s too short and sometimes you gotta make choises!!
gonna try some acupuncture today,and hopefully it helps.

Oh my Conny, you do have a lot on your plate. I have sympathy having had chronic back and bowel problems for over 20 years. Although I have to say that since having my tonsils removed in January, my bowel problems are almost gone..... And a good osteopath has almost eliminated my back pain, although mine has a different cause to yours.

hugs

Nick

[Nick_F]

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

that's really tough. in that respect, alzheimer is a merciful disease because at a certain stage, people don't realize any more what's happening. however, my grandmother is not there yet (fortunately or unfortunately ?). she suffers from depression because she realizes that her mental capeability decreases.

how does your mother take it ? she's not that old yet with 76. do your siblings help caring for her as well or are you on your own ?

I have  a sister who takes over when I need a break. The less said about my brother the better.

Mum handles it all quite well I suppose, but is very frustrated at being such a burden.

[Nick_F]

That is one of the worst things with Mum, mentally she is still as she always has been, physically she is trapped in a decaying body.

this is so tragic,i can imagine how she must feel. it makes you so totally depend of others. that must be realy hard for her!!

i see it with my mom,she is 66 and having post-herpetic neuralgia as well(just like me) but in a very heavy way.she screams now and than from pain,has it all day and night and doenst come even out of the house anymore.due to medicines she took she now has eyeproblems and all other kinds and cant drive a car anymore or walk by herself!
from a independ woman,who would go on vacations alone and walk miles and miles in japan/new sealand and so on,she now is a wreck,sitting at home,doing nothing that sleeping and crying.
and she went trough everything but nobody can help her.although she`s gonna have an operation on her eyes in a few months now.
and they are speaking of again a new med against post-herpetic neuralgia.

i realy hopen i never am getting it in a way she`s got it.
she speaks a lot of killing her self,and i dont know how to react on that.
but when i am in pain and when i think of hers to be so much more than mine,than i sometimes can understand her.

Will your mother not take anti-depressants, she sounds as if she needs some assistance with her depression?

[desertrat]

I have  a sister who takes over when I need a break. The less said about my brother the better.

Mum handles it all quite well I suppose, but is very frustrated at being such a burden.

at least you're not completely alone in that...i remember the story about your brother, no explanation needed 

it must be insanely frustrating to entirely rely on others...however, it happens to young people as well (after accidents,..). does she live with you ?